Tough Decisions

When is the right time to go to a care home?

I realize that this question may shock many of you here, especially those who can still be relatively active despite their MS. If someone had mentioned the mere word ‘care home’ to me five years ago, I would have asked them whether they’re crazy. Why would I ever want to even consider something like that? After all, I’m married and my wife is my main carer. Yes, my MS may be progressing and gradually robbing me of my independence. But I have my own home and can do as I like, obviously within the restrictions that the MS is placing upon me.

Being faced with the question for the first time

That was also my reaction two years ago, when my doctor mentioned the two words to us for the first time. Granted, three years on, I had lost a lot more of my physical abilities and was in need of much more care than before, which was becoming more challenging for my wife, who is not only my carer, but also has a quasi-full-time job (as money has to come in from somewhere after all).

I remember sitting in the doctor’s office with my wife by my side, at first stumped at the audacity he had to suggest something as outrageous as this.

His argumentation was that he felt it was no longer safe for me to spend extended hours on my own during the day, without anyone there to look after me, or be at hand in case of an emergency. And that the burden on my wife may have become too much. But I didn’t want to hear any of his ‘silly arguments’. I went into a rage and called him names that are unfit to be printed.

Soon after that, I changed my doctor.

Deep inside of me, though, I knew that it had become very tough on my wife, and I saw that she was suffering. So a solution – at least temporary – had to be found. The initial idea was to find respite care for a couple of months, to give my wife some time off. Not that I was very keen on the idea as far as I myself was concerned. But I felt it was the only solution, though adamant that this was not going to be a ‘test drive’ in preparation for a permanent solution away from home, but just a short-term ‘holiday’, to allow my wife to recharge her batteries.

In the process, however, we couldn’t find a suitable place that would either have taken me on a short-term basis, or within an acceptable distance for my wife to visit.

Temporary alternative solution

Luckily at that point, my in-laws stepped in. When they became aware of our dilemma, they offered me to stay with them for the summer. Granted, they live around 150 miles away, but we had lived with them before, about 20 years earlier, so they feel very close to me.

Some arrangements needed to be made – such as renting a medical bed or putting in ramps –, but they seemed very eager to help out. And it gave my wife the opportunity to visit them as well as me at most weekends.

After about two months, I returned home, and we resumed our regular routine, with my wife having recovered from the stress and fatigue she had been suffering from. Any idea of a care home had, at this point, been pushed far away. That was in 2016.

Getting more difficult

At the beginning of summer last year, when my wife again approached a burn-out state, and we knew something needed to be done, we had another talk with my in-laws, and soon enough we agreed that I would stay with them again for a couple of months.

But my MS hadn’t stood still in the meantime. One year on, I needed more care. Earlier in the year I had undergone an ileostomy to take care of severe bowel problems I had been having, and the bag needed regular emptying and replacing. So my wife stayed with us for a week to train her mother on the new caregiver tasks.

After that, we entered a similar routine as the year before, which worked really well. But because there was no ceiling lift to transfer me from bed to wheelchair and back, they had to lift me each time. With my in-laws being almost 75 and 80 respectively at the time, and having ailments of their own, this was beginning to be a problem.

And towards the end of summer, when the time for my return approached, it also became apparent that I now needed regular care also during the day, which my wife would not be able to provide because of her job. Finding an external carer proved to be more difficult than anticipated and forced me to stay at my in-laws for one month longer than planned.

Difficult decisions ahead

Fast forward to 2018, and I have now been staying with my in-laws again for the last 2 months. But it has now become apparent that this would be the last time. In the meantime my father-in-law had developed a serious heart condition, which required triple-bypass surgery a few months ago. And while he has been recovering well, it’s clear that he cannot do as much as before – such as lifting me. So that job now falls to my mother-in-law, who is still physically fitter and younger than him. But it’s getting harder for her, too.

We are now again approaching the time for my return home in September, and sure enough, the question of whether it might be time to consider a care home has surfaced again.

Well aware of just how much my MS has progressed only in the last couple of years, I realise that I cannot just dismiss the idea as easily as last time anymore. My wife seems to think it’s still too early (and she probably would think that, now that she feels refreshed after almost three months of not having to look after me). But what will we do next spring or summer, when she again is exhausted from the daily routine and needs a break, but my in-laws’ house is no longer an option?

Wrestling with myself and my conscience

Do I want to go? Of course not!

Only just last month I turned 50, and I cannot imagine being confined to a care facility, away from my wife, fully dependent on nurses for my daily care. Only 50, for Chrissake! Likely to be surrounded by people in their 80s and 90s. What kind of a life would this be?

But at the same time, I’m asking myself what kind of a life my wife is having now. Spending two hours each morning getting me up, washing me, dressing me, helping me with the food. Rushing to work, while a carer comes to the house 3 times a day, 30 minutes at a time, to take care of my basic needs. Then rushing back home, taking care of the household and of me and sinking into bed totally exhausted at the end of the day, but then having to get up a couple of times during the night to turn me over or to change my ileostomy bag. And only for the same routine to start again the following day.

This disease is not fair. Not on those afflicted and not on their loved ones. It’s not fair on anyone. Nobody deserves a life like this!

But while there is absolutely nothing I can do about my own condition, which is likely to only worsen further in the coming years, I can give my wife a better quality of life. It absolutely breaks my heart to think that after almost 25 years of marriage, we may have to live apart permanently, and all we will have left together will be short visits or perhaps some outings.

However, I feel that I owe it to her. Then again, it just seems way too early. It’s a decision that will be irreversible. Once we have gone down that road, there will be no way back! And that scares me more than anything else.

What if we cannot manage to live apart from each other? If we miss each other so much that it breaks our hearts? I cannot just say, hey, let’s just move back home and try again. It will be permanent. And that word is scaring me to death.

Should we try to get at least a few more years before deciding to do the inevitable? Should we try harder to find other temporary alternatives?

I’m definitely not ready for a care home. The mere thought of it totally freaks me out.

I don’t know what to do. I’m torn over this, and my mind is going crazy.

Mind you, I’m not expecting anyone to present me with the perfect solution, because I think there isn’t. But I would certainly value others’ opinion, especially those perhaps in similar situations, with advanced MS, and possibly battling with the same questions.

Thanks for listening and sorry for being so wordy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • Lexine Darden
    6 months ago

    Rolly, I so appreciate your candor about your situation. I have often contemplated under what conditions I would move to a care facility. And a main reason would be to alleviate difficult care giving. I am 60 my daughter is 22. 22 for Chrissake! As you say. Your situation obviously is different because you are married and share a deep love for each other. I know that in my life I have always tried to do what is for the greater good for all. Wii with MS have to confront our desires versus the obligation we feel towards others. I live in my head a lot as a writer and political Junkie so not being around the person I’m close to, my daughter I could adjust to. It’s our mind our memories and our acceptance of unwanted change that we must learn to compromise with. The same applies to our loved ones. Loving our dearest and they’re loving us as we do well motivate us how to make it work in a manner for the greater good for us all believing we will not be deprived of that which is most important to us… that being love and demonstrating it the best way we can. I wish you peace and contentment of heart.

  • Dorry
    6 months ago

    You are in turmoil. Having to overthink all the scenarios to make a decision that will work. Men quite naturally think of the welfare of their family and want to do the best for them. You are not in a position to think for your wife. Let her make the decision to what she can manage. Having respite care is working at the moment. But because you are thinking also of the future and the worsening of your condition you are robbing yourself of a good quality of life now.
    I nursed my husband for 3yrs.39days through the worst cancer ever. I loved him so much I would do anything for him. I was exhausted. I had no support. No Respite. I just got on with it and because I have a deep Faith I laid my burdens on Jesus and let Him carry the load for me. And He did!! I could do nothing about what life gave me. I would never consider putting my husband in a hospice. He did not want to go and I honored his wishes to die at home. I feel privileged to be married to the man I loved for 44yrs. and I feel privileged to have cared for him through the worst days of his life. This is what Love is. Love is caring for your partner as much as you are able to do and if life dictates differently you will cross that bridge when it comes.
    You know you have a serious illness that is causing you the worst anxiety because you have to make many decisions. Deal with only the decisions you have to deal with today. Let tomorrow take care of itself. Put in place what you need to for the months you know you need care. Give yourself a break from the worry. Enjoy the moments you are in when you don’t have to worry and do something for yourself that you love that will just give you some respite from the worry of the future.
    Face the reality of going in to care only if it comes to it. Don’t let the fears of the future cloud your TODAY!. I am sure your wife loves you very much. She may be led by your decisions. Ask her what she wants. I picked up on her hesitancy at the end of your story/experience. She is living this disease with you. She is unhappy about a lot. Talk to her. Don’t make the decisions for her. This is just a woman’s perspective on what is so hard for you to live with. Also it would be helpful to get Counselling support. I did and it helped me make better decisions and gave me the strength to cope with more. You are carrying too much emotionally. Cast this on a Counsellor and unburden yourself. You will end up feeling more comfortable when it comes to making a final decision about your care. I hope this helps and I am so sorry for what you are going through. God Bless! and may you be Comforted by God.

  • rayche
    6 months ago

    This is a heartbreaking issue. I recently heard of a concept-I think UK based-where friends and family are involved more in hospital like care. It is a big change however you look at it, and with respect to that, there must be some advice at least that is available to you from the U.S.national M.S.society.(I am not good with U.K. links,U.S. not good either,but an M.S.nurse,any social advice organisation, hospital,long term care associations/clinics will be useful I hope. Write/type/tap everything down ( sorry I had to say that but often useful)

  • marigoldg
    6 months ago

    I have Secondary Progressive MS. In the past two years, especially the past year, the progression has been especially aggressive and long term care has been an issue I’ve been pondering for the past few months. I live with my adopted mom and brother in a split level house. I’ve reached a point where walking is a major problem, I can no longer stand for extended periods of time, can rarely drive, have problems navigating stairs and the list goes on and on.

    I don’t want to put my mom in the position of having to help me more than she already does — she does my laundry, cooks meals and more. Since I’ll be 55 next year, I’ve been looking at semi-independent living communities. In many of these communities, I can have things like housekeeping, meals, pet services and laundry taken care of for me.

    You might consider talking to your neurologist and seeing if there is a social worker you can talk to in their medical group. Social workers are a great source of information for exactly these kinds of questions. Even though you are only 50, there may be other options available to you that provide similar support.

    You may also think about looking for someone to come to your house periodically to provide help. Home nursing services can be very expensive. However, if you use a service like care.com you can find someone to come to your house for a LOT less money to help all kinds of things to take some of the stress off of your wife and family. For example, you can find someone to do grocery shopping, provide bathing help, housework, etc. I’ve been using the services of a wonderful care provider who drives me to medical appointments, walks my dog and does errands for $15/hr.

    Just some ideas.

  • wolfmom21fl
    6 months ago

    i cannot offer advice for your situation but i recently had to make the decision to move into my son’s home with him and his family. i am still young (60) but increasingly unable to do things for myself. most recently i had eye surgery but part of my failing vision includes a lack of depth perception and narrowing of visual field so i can no longer drive. i am also having some major issues getting around altho not nearly as severe as yours. i can only say to take things one day at a time. the path will be shown to you. perhaps a carer can come in during the day for the whole day? IDK. this isnt something i have any knowledge of but i do know how you feel. its terrifying. to give up even a tiny bit of independence is like saying you are giving up …period.. thats where i am.. i have never had to depend on anyone before and have always taken care of myself and gotten myself where i needed to be.. but here we are. in a few short years it has progressed to this point. praying for you and your wife .. thank you for writing

  • Erin Rush moderator
    6 months ago

    Hello rolly! As I have no personal input in this type of a situation, I will wisely refrain from offering any advice. I am sure you and your wife get plenty of unsolicited advice already!

    We do have members all over the mobility spectrum, so I hope some of our members in a situation similar to yours will come and share their thoughts on this post.

    I think you are very wise, loving and honest to really hash out and wrestle with these really hard questions. And I find many of your posts here to be so thoughtful, real, and quite honestly, gut-punchingly brutal. MS is definitely a condition that pulls no punches, so open, honest talk is always welcome here!

    I hope you get some clear direction on how to proceed. No matter which path you and your wife choose, I know it will be filled with ups and downs. I hope whichever path it is you continue on, that you have peace in your decision.

    Thank you for writing!

    Best, Erin, MultipleSclerosis.net Team Member.

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